posted
Welcome to Lymenet! PM sent for CT (they don't take insurance either).
I don't know of any Lyme doctors in NY who take insurance.
Band 23 is Lyme-specific.
Here is some very good information about hospitals and clinics which a very knowledgeable poster wrote on Lymenet:
"Sorry to tell you that there are no hospitals or in-patient clinics on the east coast for Lyme patients. In fact, we have all learned that it is best to AVOID such places.
The reason is that they do NOT understand Lyme disease. Everything they "know" about Lyme is wrong. And, they are not willing to learn.
If you don't already know, there are 2 camps in the medical field regarding Lyme disease. The majority camp (hospitals and infectious disease doctors and nearly every other doctor is here) believes that:
1. Lyme is extremely rare (so rare that they do not believe you have it, even with a positive Lyme test), and
2. Lyme is easily cured(generally all it takes is 30 days of doxycycline). After you get that treatment, you no longer have Lyme. Instead, even though your symptoms are still the same, they call your illness "post-Lyme syndrome". (They made this name up.)
The other camp is our Lyme doctors who know that:
1. Lyme is worse than an epidemic, and
2. Lyme is extremely difficult to cure
So, you MUST get away from hospitals and get to a doctor recommended by those who have Lyme disease. You want someone who has actually cured people of Lyme disease. You will need to be treated for these diseases long-term (meaning months or years until you become symptom-free)."
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Getting names of doctors from ILADS is NOT a good way to find a doctor. ILADS knows nothing about these doctors. This is a referral service that any doctor can sign up for. The doc may never have treated lyme and may not even believe in chronic lyme.
Regarding New York City, I don't recommend any of the lyme docs in New York City. They are very expensive and don't treat properly either.
And, from corresponding with MANY lyme patients in New Jersey, I believe that there are no good lyme doctors in NJ either. Once the folks there come to the D.C. area, they all say that we have better care here!
HopingandPraying is quoting me regarding the hospitals in her post above.
To find a good lyme doctor (they will most likely NOT take insurance) you need to check with the lyme support groups in your area and in nearby states. See Support Groups on the left side of the page.
You can also ask for input on specific doctors here on LymeNet.
You need to get lots and lots of input from lyme patients who have gone to these doctors. Spend a lot of time doing your homework. This way, you won't be spending the big bucks on someone who really doesn't know how to get you well.
You see, many doctors treat lyme disease, but few have ever cured anyone of it--very few.
You have to find one of the few doctors who is getting people well. I know a few but they are not in your area. They are in the Washington, D.C. area.
This is the way it is with lyme disease. There are few really good docs, so many patients travel out of state for their care, and in large parts of the country, they have to fly to get good care.
You can take a train from NYC and get to D.C. nearly effortlessly. So, if you are willing to consider coming here for your treatment, let me know. The doc I recommend will do telephone or Skype appointments after the first in-person appointment, so you would only have to travel here once every 3 months.
There is virtually no wait to see the doc I recommend. (The good doctors nearly always have a wait, and it can be LONG, so it is rare to be able to see someone good without a wait.)
There is a good doc near the Canadian border in the state of NY. About a 3 month wait to get in. And, I have heard there are a few good lyme docs in Connecticut.
So, that is the way it is with lyme disease. You can go to a doctor based on location and treat and treat forever and never get well. Or, you can be willing to travel and get the very best lyme doctor you can afford. This way, you give yourself the best chance of getting rid of this hard-to-cure disease.
Welcome to LymeNet! We will help you here all we can.
The best way to help yourself is to become educated about this disease. Read and reread the Burrascano Lyme Treatment Guidelines found here:
They will give you an education on lyme. Then, you will be better able to understand what the lyme specialist is telling you, and you will be able to evaluate the treatment that any doctor gives you.
This is crucial because lyme doctors are free to treat however they want. So, some use only herbs, and some give just low doses of antibiotics or one antibiotic at a time. Per Burrascano, these approaches are doomed to failure.
Dr. Burrascano was the most successful lyme doctor in the world when he was practicing. They came from every country in the world to be treated by him.
He wrote his Guidelines to teach other doctors how to cure this horrendous disease. It is not an easy read, but if you read a bit at a time and look up the medical words, you will eventually understand how this disease is to be treated.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it.
Look at the symptom list on pages 9-10. Use it to help you make a complete list of your symptoms. Take this list to your first doctor appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi hopingandpraying and TF, thank you so much for taking the time to send along this info. I really appreciate it!
I am reading Buhner's Healing Lyme currently. It's pretty revelatory.
I have been working with a naturopath here in NY for my thyroid issue, but definitely want to find an LLMD.
TF - would appreciate learning of your D.C. rec. I have family there so it could work.
Igenex labs are a definite. What's the consensus on the Advanced Laboratory test?
Thankfully, I am already on AIP Paleo, don't drink and have been living the healing/healthy life for a year in order to treat my thyroid.
First got Lyme in 1988, then was newly infected (with EM) in 1991. Probably a third infection in 1993. Was on antibiotics for six months after developing arthritis in my left knee.
Chronic strep, epstein barr and herpes simplex followed. Plus anxiety and depression. Got sick every month. Didn't feel fully recovered for at least ten years.
And now, here we go again. Posts: 2 | From Brooklyn, NY | Registered: Dec 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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